2022 In-Person CPAT Symposium - NCCS - National Coalition for Cancer Survivorship

Cancer Policy & Advocacy Team (CPAT)

2022 In-Person Symposium

June 22 – 24 | Arlington, VA

The 2022 Cancer Policy & Advocacy Team (CPAT) Symposium marked the return to in-person meetings for NCCS advocates. We welcomed 55 participants, including advocates, caregivers, and medical students from the CUPID (Cancer in the Under-Privileged Indigent or Disadvantaged) Program at Johns Hopkins, Indiana, and Ohio State Universities. NCCS has welcomed rising second-year medical students in the CUPID program to the CPAT Symposium every year since 2016, an important collaboration that benefits both advocates and students alike.

The CPAT Symposium supports members in their engagement in public policy advocacy with training on health care policy, advocacy, and communication skills. The three days were filled with laughter and learning, a few tears, and most importantly, support for each other. The energy was palpable, and numerous participants said this was the best CPAT Symposium to date.

Read below for highlights, photos, and materials from the sessions.

2022 CPAT Symposia Summary (PDF)

Event Agenda (PDF)

Session Summaries and Materials

Speaker Bios

The Symposium Experience

2022 Virtual Symposium

Session Summaries and Materials

Music as Care

Tamara Wellons, Smith Center for Healing and the Arts

Tamara Wellons from the Smith Center for Healing and the Arts shared the gift of “music as care” in her presentation. She discussed the role of music, the arts, and self-expression to support health, wellness, and healing. She filled the room with love and music and encouraged everyone to participate.

Tamara Wellons – Slide Deck »

Advocate Panel Discussion

Kimberly Bowles | Founder, notputtingonashirt.org
Nicole Bullock, MBA | Founder, Nicole Cares Foundation
Michael Holtz | American Cancer Society Cancer Action Network (ACS CAN)
Shelley Fuld Nasso | NCCS CEO (Moderator)

In this panel discussion, we highlighted the work of CPAT members around the country, on NCCS projects, social media, and other research and policy advocacy efforts. CPAT Members Kimberly Bowles, Michael Holtz, and Nicole Bullock shared their personal cancer stories, their motivation to engage in advocacy, and their advocacy strategies and tactics.

Achieving Cultural Humility in Medical Care

Lori Wilson, MD, FACS | Howard University College of Medicine

Lori Wilson, MD, FACS, from Howard University College of Medicine, presented a framework for providing medical care with cultural humility. She grounded her discussion in her own survivorship story. She described the three dimensions of cultural humility as lifelong learning and critical self-reflection; recognizing and challenging power imbalances, and institutional accountability.

Health Policy Outlook for 2022

Anne Hubbard, MBA | American Society for Radiation Oncology
Rebecca Kirch, JD | National Patient Advocate Foundation
Haley Smoot | NCCS
Shelley Fuld Nasso | NCCS CEO (Moderator)

NCCS CEO Shelley Fuld Nasso moderated a panel discussion of policy experts, including Anne Hubbard from the American Society for Radiation Oncology, Rebecca Kirch from the National Patient Advocate Foundation, and Haley Smoot from NCCS. Topics included medical debt, value-based payment models, cancer care planning and communication, survivorship, and prior authorization.

Integrative Oncology: Empowering Through Evidence and Equity

Lesley Kailani Glenn | NCCS Elevate Ambassador, Project Life MBC
Ana Maria López, MD, MPH | Sidney Kimmel Medical College
Desirée Walker | CPAT Steering Committee

CPAT Steering Committee member Desirée Walker, NCCS Elevate Ambassador Lesley Kailani Glenn, and NCCS Board Member Ana María López, MD, MPH, defined and presented the benefits of integrative oncology and outlined how evidence-based integrative practices can enhance quality of life during and after cancer treatment.

Resiliency and Legacy

Alique Topalian, PhD, MPH | University of Cincinnati

CPAT Member Alique Topalian, PhD, MPH, shared the practice of Meaning-Centered Psychotherapy and the scholarly work of Viktor Frankl’s Man’s Search for Meaning.

Download Session Slide Deck »

Telling Your Story in 140 Characters

Andrew Conte, PhD | Center for Media Innovation Point Park University

Andrew Conte, PhD, from the Center for Media Innovation at Point Park University, presented an interactive workshop on the value of storytelling. He shared strategies for telling compelling, impactful stories in few words.

Supportive Cancer Care

Thomas J. Smith, MD | Johns Hopkins Medicine

Thomas J. Smith, MD, medical oncologist and palliative care specialist from Johns Hopkins University, shared lessons learned from his 35-year career in palliative care and supportive oncology, as well as from his own experience living with metastatic cancer.

Dr. Smith shared a useful mnemonic for having tough conversations — AMEN:

A – Affirm
M – Meet them where they are
E – Education
N – No matter what

Download Session Slide Deck (PDF) »

Improving Doctor/Patient Communications Workshop

Medical students and advocates participated in a role-play exercise with three scenarios involving difficult conversations between physicians and patients. Students practiced delivering difficult news and advocates demonstrated ideal communications from the patient perspective.

Speaker Biographies

Download Speaker Biographies (PDF)

Click a speaker name to read more.

Kimberly Bowles, NotPuttingonaShirt.org

Kim Bowles is the President and founder of NotPuttingonaShirt.org, a 501(c)(3) organization advocating for optimal surgical outcomes for women going flat after mastectomy – aesthetic flat closure (AFC) – since 2018. The organization empowers patients with tools and resources to advocate for their choice, and works with institutional stakeholders – surgeons, hospitals, insurance companies, regulatory bodies – to push for improved standard of care for AFC. Their work also includes legislative initiatives. They are currently working with Rep. Stacey Pheffer Amato on New York Assembly Bill 8537 to ensure insurance coverage for AFC services for patients in New York state. This work will directly translate to the federal level. Their next initiative will target the Women’s Health & Cancer Rights Act (WHCRA) of 1998. Kim was diagnosed with stage 3 breast cancer at the age of 35 as a mother of two young children and has been NED since 2017. Her message is that AFC is a healthy, valid and beautiful mastectomy choice.

Nicole Bullock, MBA, Nicole Cares Foundation

Nicole Bullock Nicole C. Bullock, MBA is the Founder & CEO of the Nicole Cares Foundation. She earned a BS in Organization Management and an MBA from Purdue University. While battling Non-Hodgkin Lymphoma, God placed a calling on her life to use her cancer journey to help others, bring awareness to blood cancer, and share how He healed her body. In 2017, Nicole founded the Nicole Cares Foundation, a 501 (c) 3 nonprofit organization whose mission is to assist people affected by lymphoma, raise public awareness and funds for research, and provide support services for cancer patients. The foundation provides care packages, financial and survivor support groups, and blood drives. Nicole is dedicated to closing the health gap for African Americans who face health disparities leading to later diagnosis and death. Through her work with cancer patients and as a cancer survivor, Nicole brings a unique perspective to her advocacy work and looks forward to collaborating with other advocates.

Andrew Conte, PhD, Center for Media Innovation, Point Park University

Andrew Conte, Ph.D., serves as founding director of the Center for Media Innovation at Point Park University. He writes the Pittsburgh Public Editor column at NEXTpittsburgh. Previously, he worked as an investigative journalist, and he has authored several nonfiction books, including the forthcoming Death of the Daily News (September 2022, University of Pittsburgh Press).

Andrew previously worked as an investigative reporter at the Pittsburgh Tribune-Review, where he won numerous national, state and local awards. The Pennsylvania Society of Professional Journalists and the Press Club of Western Pennsylvania each has recognized Andrew with its top award four times. The Scripps Howard Foundation honored Andrew with the William Brewster Styles Award for outstanding national business and economics reporting.

Andrew’s book, The Color of Sundays, explores the role of race in the National Football League and examines how the Pittsburgh Steelers identified undervalued players at historically black colleges and universities. The Independent Book Publishers Association recognized the book with a Silver Benjamin Franklin Award. Prior to that, Andrew authored Breakaway, a bestseller about how the Penguins hockey team built a championship franchise and a new arena. He also has written All About Roberto Clemente, a children’s book about the Pirates outfielder and Puerto Rican native.

Andrew holds degrees from Columbia University’s Graduate School of Journalism and Dickinson College, as well as a Ph.D. in Community Engagement from Point Park University.

You may find more at AndrewConte.com.

Lesley Kailani Glenn, Project Life MBC

Lesley Kailani Glenn The passion, motivation, and personal experience of living with metastatic breast cancer for the past 9 years drives Lesley’s advocacy. She partners with communities, researchers and organizations to aid the funding of research for a cure, bringing awareness to this overlooked stage of breast cancer and support to those who live daily with Metastatic Breast Cancer. With a Bachelors of Science in organizational leadership, Lesley has been actively involved in advocacy since 2015, training with the inaugural Hear My Voice Volunteer class presented by Living Beyond Breast Cancer.

She was invited back as a mentor in 2018 and awarded the Living Beyond Breast Cancer Leadership Volunteer Award in the Fall of the same year. She is the Co-Founder of the Annual Make Good Moves, Climb for a Cure (www.climbforacure.net), an event held annually in Southern California and Southern Oregon that funds research for a cure. Lesley enjoys working with researchers and other stakeholders in the metastatic breast cancer field. She is a member of the Metastatic Breast Cancer Alliance, Susan G. Komen’s Advocates in Science, on the scientific advisory committee for the Love Research Army, and a consumer reviewer with the DOD-CDMRP, PCORI and Komen. She recently launched her biggest endeavor, Project Life (www.projectlifembc.com), which is a virtual wellness house for those living with metastatic breast cancer and their loved ones. You can follow the initiative on twitter @projectlifembc.

Rebecca Kirch, JD, National Patient Advocate Foundation

Rebecca Kirch, JD
Executive Vice President of Policy and Programs
National Patient Advocate Foundation (NPAF)

Rebecca Kirch provides strategic focus and leadership in bringing the millions of patient and family voices NPAF and PAF represent to the forefront of national health care quality improvement efforts.

She previously worked 15 years at the American Cancer Society and its advocacy affiliate, the American Cancer Society Cancer Action Network. As the Society’s first director of quality of life and survivorship, she orchestrated the development of its national agenda addressing pain, symptoms, and distress experienced by patients, survivors, and caregivers. She created collaborative initiatives in research, programs, and advocacy for integrated palliative, psychosocial, and rehabilitation services, as well as enhanced clinical communication skills.

Rebecca also played a leading role in planning and executing the Institute of Medicine 2015 joint workshop “Comprehensive Cancer Care for Children and Families” and the National Academy of Science, Engineering and Medicine’s Quality Care for People with Serious Illness Roundtable 2017 workshop on “Integrating Patient and Family Voices in Serious Illness Care.” She also serves as Quality of Life and Person-Centered Care’s task force co-chair for the American Congress of Rehabilitation Medicine and a board member for children’s oncology care camps.

Michael Holtz, ACS CAN Tennessee

Michael Holtz is a 10-year survivor of stage-3b rectal cancer, which drives his interest in ensuring other people get preventive screenings or are not diagnosed with cancer. Michael is the Tennessee lead volunteer for the American Cancer Society Cancer Action Network (ACS CAN), a role he has held for seven years. He was previously on staff for ACS CAN and the American Cancer Society for 12 years. His advocacy experience includes working on statewide smoke free campaigns in Tennessee and Alabama; the passage of the ACA; the passage of the Removing Barriers to Colorectal Cancer Screening Act; continuing work on the Palliative Care and Hospice Education and Training Act; and ongoing work to increase federal funding for cancer research and prevention programs. Michael has met with his federal lawmakers and their staff on numerous occasions and has also advocated for Fight Colorectal Cancer during Call On Congress in 2021 and 2022. Professionally, he has experience in grassroots organizing and media advocacy campaigns.

Anne Hubbard, MBA, American Society for Radiation Oncology

Anne Hubbard, MBA
Director of Health Policy
American Society for Radiation Oncology (ASTRO)
Anne Hubbard is the Director of Health Policy for the American Society for Radiation Oncology. As Director of Health Policy, Ms. Hubbard leads efforts to inform Medicare and private payer of policies that impact the practice of radiation oncology. This includes oversight of the CPT and RUC process, coding and coverage policies, as well as the development of an Alternative Payment Model for Radiation Oncology. Prior to joining ASTRO in 2014, she spent four years with the Maryland Hospital Association where she was involved with the renewal of Maryland’s All Payer Medicare Waiver. Ms. Hubbard has also worked for the State of Maryland as the Director of Governmental Affairs for the Department of Health and Mental Hygiene. She has a BA in Government and Politics from the University of Maryland at College Park and an MBA with a concentration in Finance from Loyola University Maryland.

Ana María López, MD, MPH, Sidney Kimmel Medical College

Ana Maria López, MD, MPH Ana María López, MD, MPH, FACP, is Professor and Vice Chair of Medical Oncology at Sidney Kimmel Medical College and Chief of Cancer Services at Sidney Kimmel Cancer Center – Jefferson Health – New Jersey. Dr. López has served as an NCCS Board Member since 2021.

Dr. López joined Jefferson in 2018 from the Huntsman Cancer Institute in Salt Lake City, UT, where she was Director of Cancer Health Equality and Inclusion and served as Associate Vice President of Health Equality and Inclusion at the University of Utah Health. A board-certified Medical Oncologist, Dr. López’s clinical expertise is in women’s malignancies, integrative medicine and oncology, and telehealth.

Dr. López is President-Emeritus of the American College of Physicians, the largest medical specialty organization in the United States. Her strong commitment to health equity is reflected in her work with the American Society of Clinical Oncology as former Chair of the Health Equity Committee, and with the Association of American Medical Colleges where she serves as Member of the Steering Committee of the Group of Women in Medicine and Science. Her areas of expertise and research focus include cancer prevention, integrative oncology, and innovations in healthcare.

Shelley Fuld Nasso, MPP, NCCS Chief Executive Officer

Shelley Fuld Nasso Shelley is honored and humbled to serve NCCS and the millions of cancer survivors and their family members NCCS represents. She is a policy wonk and advocate and loves to empower cancer survivors to make their voices heard in Washington, DC and around the country. She joined NCCS in December 2012 and was named CEO in October 2013.

Prior to joining NCCS, Shelley served in leadership roles at Susan G. Komen, where she leveraged Komen’s grassroots network in Washington, DC and in state capitals. There she built relationships with policymakers and partner organizations and led a team of staff and volunteer leaders to influence state budgets and legislation. Shelley has also served as Director of Community Philanthropy at The Dallas Foundation and held management positions at communications and technology enterprises. She is a graduate of Rice University and holds a Master of Public Policy from the Harvard Kennedy School.

Shelley’s commitment to the work of NCCS is strongly tied to the experiences in the cancer care system of her dear friend, Dr. Brent Whitworth, a beloved physician who was diagnosed with stage IV cancer days before his 42nd birthday and who passed away 19 months later. Through Brent’s experiences, Shelley witnessed the strengths and flaws of the cancer care system and embraces the notion that policy change can make cancer care better for patients and caregivers.

Thomas J. Smith, MD, Johns Hopkins Medicine

Dr. Smith is an oncologist and palliative care specialist with a lifelong interest in better symptom management and improving access to high quality affordable care. As an oncologist he specialized in comprehensive multi-disciplinary breast cancer for 25 years. With the late Dr. Chris Desch he helped start the Rural Cancer Outreach Program (RCOP) of Virginia Commonwealth University’s Massey Cancer Center. This brought state of the art cancer care including clinical trials and palliative care to five rural hospitals in Virginia. The RCOP improved care dramatically, saved patients millions of travel miles, and ensured that indigent patients could receive care near their home. As an oncologist, he worked to remove the financial incentives for giving chemotherapy, and to standardize guidelines for care.

With Patrick Coyne and others, he helped start the Thomas Palliative Care Unit and Program at VCU-MCV in the late 1990s, one of the first academic palliative care programs in the country. He and colleagues showed that palliative care improved symptoms, allowed patients and families to choose the care they wanted, did not cost more than usual care, and even improved survival.

Currently, he is the Director of Palliative Medicine for Johns Hopkins Medicine, charged with integrating palliative care into all the Johns Hopkins venues. The PC consult service sees over 1500 new patients a year, and a research agenda with “Scrambler Therapy” for chemotherapy induced neuropathy, neuromyelitis optica spectrum disorder pain, and central pain; palliative care for patients on Phase I drug trials; palliative care for patients undergoing Whipple procedures; and auricular point acupressure for cancer pain, among others.

Dr. Smith has been recognized in “Best Doctors in America” for many years and is a Fellow in the American College of Physician, the American Society of Clinical Oncology and the American Academy of Hospice and Palliative Medicine. In 2015, he received the ACS Trish Greene Award for “outstanding research that benefits cancer patients and their families”, and in 2018 was recognized as a “Visionary in Palliative Care” by AAHPM. In 2019 he received the Project on Death in America (PDIA) Palliative Medicine National Leadership Award, and the Walther Foundation-ASCO award for excellence in supportive oncology. In 2020 he received the Ellen Stovall Award from the National Coalition of Cancer Survivors that recognizes individuals, organizations, or other entities who demonstrate innovation in improving cancer care for patients in America. He has published over 450 articles, editorials and reviews, and helped write the test questions for the ABIM hospice and palliative medicine exam.

Haley Smoot, NCCS Director of Public Policy

Haley Smoot joined NCCS in the fall of 2021 and serves as the Director of Public Policy. She is responsible for representing cancer survivors on Capitol Hill and with federal agencies and state governments to advance NCCS’s policy priorities.

Prior to joining NCCS, she worked with the Texas Health and Human Services Commission where she led and implemented critical legislative initiatives, including projects centered on CHIP, Medicaid, and the implementation of the Affordable Care Act in Texas, and provided strategic guidance and support as the Senior Policy Advisor to more than 40 social services programs. Apart from her experience in state government, she worked with the American Heart Association and Leukemia & Lymphoma Society where she spearheaded policy, advocacy, and partnership efforts.

Haley’s passion for cancer policy and advocacy stems from her own personal connection. Her father battled cancer from 2015 to 2017, and her mother was later diagnosed with cancer in 2019. As her parents’ caregiver, she witnessed first-hand the challenges of the current health system and the importance of quality cancer care.

Haley holds a bachelor’s degree in History from Rhodes College in Memphis, Tennessee and a master’s degree in Material and Visual Cultures of the Past from the University of Edinburgh in Scotland. She is currently pursuing a second master’s degree in Global Health Policy from the University of Edinburgh.

Alique Topalian, PhD, MPH, University of Cincinnati

Alique was diagnosed with cancer (AML) for the first time at four years old. This experience inspired her to obtain a Master’s in public health and a Ph.D. in Health Promotion and Education, which she earned in March 2020. Alique always knew she wanted to have her research associated with oncology and survivorship. Since she is an early career researcher, she started her research in the mental and behavioral health arena and focused on programming for psychosocial behaviors. In March of 2021 she relapsed with AML, the first person to ever relapse after 22 years. During her time in active treatment, she used every opportunity to network, participate in psychosocial programming of all forms, and educate herself on resources available to patients through all stages of treatment. She aims to find her way into the oncology survivorship research realm.

Desirée Walker, NCCS CPAT Steering Committee

Desiree At the age of 38, Desirée was diagnosed with breast cancer, which reoccurred at 47. She serves as an advocate for patients by openly speaking about her diagnosis to audiences globally. Desirée shares her time and talent conducting outreach in the African American community to educate others about breast and ovarian cancers as well as the importance of research and participating in clinical trials. Her goal as an advocate is to increase the likelihood that all cancer survivors and thrivers have access to quality health care and quality of life after a diagnosis.

Through research advocacy, she reminds the research community that science cannot truly advance without participant diversity, especially those burdened by disease. Through SHARE’s Side by Side Program, Desirée trains medical students and physicians on how to deliver disappointing news. She also volunteers with NCCS, NCI CIRB, Society of Integrative Oncology SWOG and Young Survival Coalition. She seeks resources to train communities on research and legislative advocacy.

Lori Wilson, MD, FACS, Howard University College of Medicine

Lori D. Wilson, MD, FACS Lori L. Wilson, MD, FACS, Fellow of the American College of Surgeons and Chief of Surgical Oncology at Howard University Hospital & Professor, College of Medicine; is an accomplished surgical oncologist, clinician scientist, mentor, and community activist. As prior General Surgery Program Director, she mentored thirty-three outstanding young surgeons. Dr Wilson completed her undergraduate and medical school training at Georgetown University, general surgery residency at Howard University Hospital (HUH) then completed a fellowship in Complex Surgical Oncology at John Wayne Cancer Institute (JWCI) and Cedar Siniai. Her first faculty position was at UConn Health as Associate Director of Surgery, Melanoma and GI Programs as well as Surgical Director of The UConn Clinical and Translational Breast Program in The Carole and Ray Neag Comprehensive Cancer Center.

Her global surgery efforts have led to 9 humanitarian missions to low resourced countries in Africa. Dr. Wilson has developed several programs at Howard University Cancer Center to serve under-represented minorities, which is a mission of hers. She received an R01 grant as well as others to aid in this mission. Dr. Wilson has been active as the Cancer Liaison Physician of the ACS as well as the CoC State Chair DC. She been Director of the monthly Howard University Cancer Center Mammoday Program for 9 years providing free breast cancer care for underinsured and uninsured patients.

Nationally, she has led the Susan G. Komen African American Health Equity Initiative and led the development of a national literacy campaign, “Know Your Girls” which was supported by newsprint, radio and national news networks. As a national surveyor for the National Accreditation Program for Breast Centers, she surveyed over 80 programs focusing on breast health with dedication to improvement of quality outcomes for patients.

Her engagement with the lay public regarding health literacy is found in magazines and newspapers including, The New York Times & NYT OpEd, Los Angeles Times, The Hill, Essence Magazine, Vogue, Better Homes and Garden. She shares her own journey in the Ken Burns’ Documentary based on the Pulitzer Prize Winner, Cancer The Emperor of All Maladies, where she was followed and eloquently helped to reshape the way the public sees cancer.

Dr. Wilson has served on the Board of Directors for the American Cancer Society, African Women’s Cancer Awareness Association (AWCAA) as well as the Advisory Board of other cancer-related organizations such as ACT for NIH.

Dr. Wilson has given over 180 academic and community lectures capped by an invitation to the White House from former President Obama to discuss healthcare disparities.

Tamara Wellons, Smith Center for Healing and the Arts

Tamara Wellons is a vaunted, soulful vocalist whose artistry resonates in multiple realms with the vitality of the timeless definition of rhythm and blues. With two decades of experience as a recording artist, Tamara has executive produced three albums and has a profoundly diverse career working with internationally and nationally Grammy award winning DJ/Producers.

Tamara is President/CEO of Her Dreams Productions, and is founder of a music with a message platform entitled Healings Grams. Her work in the Arts in Health field has brought her most treasured experiences both as a singer and as a manager of programs. Tamara manages the Artist in Residence Program for Smith Center for Healing and the Arts’ at two hospitals and four cancer centers in Northern Virginia. She volunteers her time as an advocate for music creators within the membership of the Recording Academy where she serves as the Washington DC Chapter Board President.

The CPAT Symposium Experience

Hear what attendees had to say about their experience at the CPAT Symposium.

“It really sucks to have cancer, but I am beyond grateful and thankful to have found NCCS for helping me take control of my cancer story and turn it into advocacy.”
— Xenia Rybak

“The CPAT Symposium was an experience of a lifetime. The symposium offered a safe place to ask questions and share personal experiences. As a 15-year breast cancer survivor, just being in the room with other cancer survivors added such joy to my own journey.”
— Ruth Travis

“I’ve attended NCCS conferences since June 2016, and what I appreciated the most was how diverse this conference was! The speakers were very informative and passionate about their advocacy work that they’re doing in the cancer community.”
— Roberta Albany

“Meeting and networking with other survivors representing different cancers shows how we can all work together for our cancer communities. Like so many said, ‘CPAT is like a family,’ and now I am one of the newest members.”
— Lesley Kailani Glenn

“This year’s event was packed with excitement. The speakers were engaging, and what I loved most was the relevance they conveyed. Much of this could be applied to other organizations —not just our cancer community. That’s real value!”
— Kirby Lewis

“Being able to attend on scholarship was the only way my attendance would have been possible this year. The symposium was great, from start to finish. I thought the sessions were impactful and educational at the same time.”
— Michael Holtz

“At the CPAT22 in-person symposium, I appreciated the up-to-date research, guidelines, and opinions gained from other cancer survivors, caregivers, and doctors. I also welcomed the opportunity to interact with young doctors from all over the United States.”
— Sandra Calloway Fields

“I have attended many different cancer conferences, but this was, by far, the best. I walked out with information that I was able to use immediately and will be sharing immediately. It was great to be with a group of inspirational advocates from whom I learned.”
— Lora McCann

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